Friday, July 25, 2014

Yesterday
on the KGAT website (www.kidsgetarthritistoo.org)
there was a great article written by a JA parent, Colleen Ryan, regarding our
Juvenile Arthritis Families.For those
of you who know, or know of, Colleen you know how absolutely awesome she
is.For those who do not know Colleen,
she is an absolute inspiration in our JA world.The article she wrote puts into words how so many of us felt when we
finally got to connect with another family, or person, or kid that could
PERSONALLY relate to what we were going through; it was like this weight was
lifted off your shoulders.To finally
get to meet and bond with people who knew just what you were going through…for
lack of better words, it was an AWESOME feeling that someone was in the same
boat as you.Those people have become
known as our “JA Family”.I have JA
Family all over the US; some are within a 20 minute drive, some 2 hours (which
for most is still pretty lucky compared to some).Then I’ve got some that are 6-7 hours, but
still within the same state.Then we
start getting into Texas, Massachusetts, Tennessee, North Carolina, Florida,
etc.

But
for me my “JA family” doesn’t just consist of the other JA families I’ve bonded
with.My JA family also consists of the
doctors that treat Bevin.There’s our
Pediatrician, Dr. Cutts; I know for some, the Pediatrician isn’t part of the
main doctor circle for the JA treatment, but Dr. Cutts diagnosed Bev’s JA the
very first day I brought her in so he is a very big part of our “inner” circle.Our ophthalmologist, Dr. Ruben, the
dermatologist, Dr. Hansra, and of course the numero uno doctor our
Rheumatologist, Dr. Radhakrishna.

Now,
the nice thing with all of the JA families we met, bonded and connected with,
where we consider them part of our “JA Family”, most of them also consider us
part of their “JA family”.With our
doctors, where I may consider them part of our “JA family”, I’m pretty sure
they don’t consider us part of their family or “patient family”.I can guarantee that they make a much bigger
impact on my life than I do on theirs.I
go to a doctor’s appointment with Bev and I can come home and talk about how
wonderful, helpful, etc doctor so and so was for the next hour or so.I’ve even told my husband on NUMEROUS
occasions that I LOVE both Dr. Cutts and Dr. Radhakrishna and I would be LOST
without them.They may be doing their
normal doctor/patient duties for Bevin, but for me I have felt more than once
that they have gone above and beyond to help or make me feel at ease.Because of that, you are now part of my “JA
Family” whether you want to be or not.

I
work in health insurance (I’m a health insurance agent) and I’ve worked with SO
many clients over the years that have been insistent that they have to stay
with a carrier that covers their specific doctor’s network.I HAVE to keep my doctor, they would tell
me.They would complain about the
outrageous cost of premiums, but would refuse to look at significantly lower
cost plans because their doctor was not a covered or in-network provider.Before Bevin was diagnosed with JA I didn’t
fully understand.I mean I understood
wanting to have a doctor you were comfortable with, but I just didn’t think it
was a big deal.Now oh boy do I get
it.I would pay twice the money in
premiums if I had to so that we can stay with Kaiser.Not only because I think Bev’s doctors are
absolutely amazing , OF COURSE I’M BIAS, but also because Kaiser is the only
carrier in Northern California that even has a Pediatric Rheumatologist. If I don’t have Kaiser, then I have to drive almost
2 hours to the Bay Area to see a Rheumatologist…

Yesterday
we saw a member of our “JA family” for the last time; Dr. Radhakrishna.He is leaving Kaiser and moving down to
Southern California.So any Southern
California JA kids you will be getting access to an AWESOME rheumatologist (and
no he’s not staying with Kaiser).When
he told us he was going to be leaving the news hit me much harder than I expected
it to.I remember when I was about 20
and my primary care doctor that I really liked told me she was leaving.I really liked her, but I was just like “oh,
that’s too bad”.When Dr. Radhakrishna
told me a couple of months ago he was going to be leaving I thought I was going
to cry (which I’m sure was obvious by the look on my face and he probably thought
I was crazy).I guess that’s what
happens when you become vested with a doctor for your child.I also proceeded to interrogate Dr. Cutts to
make sure he didn’t plan on leaving us any time soon because I couldn’t lose
two of them at once!

We
had a phone follow up scheduled with Dr. Radhakrishna next month and they called
to reschedule it due to his last day coming up before our phone appointment.Me being the panicked type that I am wanted
her to be checked out in person by him before he left (even thou she’s
fine).But it was one of those “ he
knows her history, he knows her” things…so he kindly fit us in to his very busy
Roseville schedule on his last day in Roseville.So Bev got to see him one more time…she drew
him a picture and we gave him a thank you card for being so great…she wanted to
know if he was leaving because he didn’t like us anymore.

So
now, after we started this journey with no rheumatologist we are back to having
no rheumatologist, but Kaiser is supposed to be getting a full time
rheumatologist in Roseville (instead of someone commuting from Oakland once
a month), so that part is good news.But
I am very bummed to have lost one of the major players in our “JA family” and
do feel a little psycho stalker to be this upset over the loss of a doctor.

Dr.
Radhakrishna and Bevin at the May 10th Tri-Valley “Walk to Cure
Arthritis”

It
is BEAUTIFUL there and they have SO much to do!I will definitely have to look into a family vacation there down
the road!

For
whatever crazy reason we drove there…17 ½ hours…yes you read that
correctly.We left Wednesday morning at 5:30am
and made it to Grand Junction, CO at 9pm (their time; they’re an hour ahead of
us Californians).

Then
we got up bright and early and finished our trek to Keystone!

The
view from our condo

We
checked-in for the conference and got ready for the opening night dinner which
had a theme of “80s Night”!!!

Then
of course the next day we got to start the conference and all the breakout
sessions and of course it was the 4th of July!So that night after listening to all of the
awesome speakers we got to relax at the resort and watch the fireworks show
(and we had some AWESOME Philly Cheesesteak pizza from a local place called
Jersey Boys Pizza and Deli).

The
girls having their dessert and waiting for the fireworks to start!

The
next day there were more sessions and the awards were handed out.Three of my FAVORITE JA moms (Katy, Colleen
and Tina) all got to host/lead sessions/roundtables, so of course I went to
cheer them on.

We
took a quick break at lunch time and I took the kids snowtubing for a bit…yes
there was snow in the summer.

And
then Saturday night was “Hoedown Night”; so again we got on our theme attire
and went down to the stables to get our BBQ and dancing on!!!

Me
and Katy

Bev giving her Bestie Bridget a HUGE hug!

Me and the awesome Jen Ziegler!

And the great group photo they took!

Sunday morning was the JBR/Walk Expo and there
were 10 families asked to host tables to show fun and different ways they have
been successful at fundraising and yours truly was asked to host a table.Althou thanks to Tina I have officially been
dubbed the “Garbage Lady” after a breakout session from Saturday morning.

Our
awesome recycling table!

Tina-The other “Garbage Lady”

Everyone’s JA Mom Hero!!!Colleen Ryan

And
we even got to see Santa due to Kate Kuhns awesome Fundraising idea for JBR!

After
the JBR/Walk Expo we got in the car and started the trek back to Cal-I-Forn-I-A…

We
hit a FREAK hail storm in Utah

The
after sitting in HORRIBLE traffic due to a gravel truck overturning and having
to back track thru Carson City we FINALLY made it back to California!!!!

Some of our "JA Family"

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What causes JRA/JIA?

By Mayo Clinic Staff

Doctors believe that juvenile rheumatoid arthritis is an autoimmune disorder. This means that the body's immune system attacks its own cells and tissues. It's unknown why this happens, but both heredity and environment seen to play a role. Certain gene mutations may make a person more susceptible to environmental factors-such as virus-that may trigger the disease.

How is JRA/JIA managed?

From the Juvenile Arthritis Foundation

Once a diagnosis of JRA/JIA is made, the doctor will coordinate a treatment plan that will most likely include exercise and medications to control the inflammation of the joints. Treatment may be altered as the JRA/JIA changes over time.

Is there a cure for JRA/JIA?

From the Juvenile Arthritis Foundation

There is no cure for JRA/JIA. However, with treatment and support most JRA/JIA can be controlled and children can lead full and active lives. Symptoms can last for months or years. Sometimes the symptoms go away on their own, this is called remission. Approximately half of children with JRA/JIA go into remission before they reach adulthood.